Decision-making and anxiety post-bleed

Hi everyone. I'm new to this group and just wanted to reach out.

My husband's bleed was three years ago (AVM in right temporal lobe). He made it through miraculously and life seemed to stabilise, albeit as a 'new normal' way of living. The sad and difficult change has been his ability to cope with challenges; personal, professional or otherwise. He finds it all so hard. Anything that is new to learn, is outside of his comfort zone, or requires him to make a decision based on his own needs leaves him panicked and acutely distressed. He defers all decisions and responsibility for himself to those around him: his boss, me, his family, friends and in turn has become incredibly difficult to cope with or support. Whatever advice he receives has no impact anyway, as he doesn't have the belief or ability to act on it. He remains trapped in in-decision limbo. I cannot decide what is best for him, I can only encourage, listen and reassure. But, fundamentally, it's his life and his health.

He has tried therapy but frequently cancels sessions and has little faith in its benefits. He has tried mindfulness meditation and exercise, which he enjoys, but struggles to sustain these. He has quit his most recent job (work and owning his own home are major triggers) and is on anti-anxiety and anti-depressant meds but at the moment these don't seem to be taking effect. I'm feeling very worried, frustrated, sad and lost. Things have gotten so fraught we're having to live apart at the moment, which is just so awful at Christmas.

Has anyone else experienced this personally or with someone they love post-bleed?

10 Replies

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  • not really my hubby was annxious after his tumor but he is not so bad now,do get in touch with headway they are awesome! and will point you both in the right direction

  • Jo, can you tell me how long your man has been taking the antidepressants, and which ones they are ? x

  • Since September this year, had to go on Mirtazapine as others are too high risk as they'll lower his anti-seizure threshold .x.

  • Oh well that's easily long enough for it to have taken effect. I'm sorry that there are the added complications with meds owing to seizures.

    What a struggle you're both having with this Jo ; it's not something I've ever come across.

    But please try the Headway helpline as Razy suggested ; they have so much more access to agencies and trained professionals and will do everything possible to support & advise you.

    It's 0808 800 2244 9am-5pm Mon-Fri.

    I really hope you can find the help you so badly need. Cat x

  • Thank you both so so much. Take care and HNY .x.x.

  • You too Jo. All my best wishes. xxx

  • Good morning. I can sympathise with a lot of your worries. My husband had a burst aneurysm in 2012, which caused a sub arachnoid haemorrhage and a stroke (he is 61) His prognosis was very poor (as are most people's after a BI) but he has made really good progress. He also suffered with full tonic clonic seizures for the first 12 months or so, but fingers crossed, these are now well under control.

    His personality has certainly changed hugely, and not for the better. He used to be a loving, gentle, quite shy man, happy and contented.

    Now, he is a flirtatious, childlike, often depressed, sometimes loud, attention seeking different person. I find it unbelievably difficult to cope with this "new husband" and our relationship is certainly totally different to what it was.

    But we muddle through, I am learning to tell him less, and disagree with him as little as possible, so as not to cause yet another argument, which invariably turns into a full scale row!! I try to put on a smile when he flirts outrageously with any female who pays him any attention, and try not to groan when he tells awful jokes, or tries to do magic tricks.....another of his childlike traits which have appeared since all this happened.

    He has had several attempts at counselling, the latest is ongoing at the moment. Personally I don't think anyone can really help him, but if he feels it is of benefit, then that's fine.

    He has no responsibilities any more, I have had to take charge of everything financial, the running of the house, driving etc. etc. He had retired a couple of years before his bleed, so working has not been a problem, although our change in lifestyle has been hard to accept at times.

    Weight gain has also caused a huge problem with his mobility, and he spends most of his days lying on the sofa, watching awful TV programmes. His biggest motivation has been Disabled Golf, which he began to enjoy last year, but since hurting his back, even this has had to be put aside for now.

    You have my deepest sympathy, life is very difficult, and I can so understand how living apart has become an outcome for you. My husband could not cope on his own, so it's not a possibility for us, and so we plod on into 2016, hoping the new year will bring some better times.

    Having just re read this, there is nothing here that will help you, but hopefully knowing others understand and have experience of what you are going through will give you some comfort.

    Very best wishes, and a Happy and Healthy New Year to you.

    Molly x

  • Wow. Molly, my heart and warmest regards go out to you .x. You sound very brave and strong, although I bet you don't feel it at times.

    Thank you for your words. They do provide comfort that I'm not alone in this world dealing with such challenges.

    I always feel selfish when expressing anguish as 'the partner' of someone who was victim to the actual traumatic BI, but it truly does take its toll on all those around, especially the other half. So so hard.

    Like you, I'm hopeful for 2016 and will work hard to make the best of this rotten deal life has dealt but also overcome the inevitable hurdles ahead. Having space to reflect and reach out has charged my batteries a wee bit so that has been a necessary evil, I guess.

    I have now got in contact with Headway and will await their response in the NY.

    All the best, Molly. Make sure you do a little something nice for yourself this festive season - you deserve it.

    Warmest best wishes and HNY.

    Jo

    .x.

  • Lovely message, thank you Jo, and yes, I certainly don't feel very brave and strong very often!!

    We are very lucky here in Leicestershire, that we have a Headway Day Centre a few miles away, and Steve attends 2 days a week, which he enjoys very much, and to be honest it has been a life saver for both of us. It means he gets to be with like minded people, and enjoy doing a number of crafts and hobbies which he would never have even tried otherwise, and I get 2 "days off" every week, which I cherish!! It is such a shame that every county doesn't have the necessary funding for these places.

    Very best wishes to you too, and please keep in touch

    Molly x

  • Hi jo, my fall was in September 2012. I guess I had similar injuries, mine a contusion to the right frontal lobe and swelling. I also ended up deaf on the left and continue struggling with balance. Along the way I have passed through pretty much every emotional state possible, the worst I guess being feeling hopelessness and paranoia.

    I would agree with the others to get Headway involved, they helped me. However, much of the longer term help was since they pointed me to this site. Seeing what other poor people have to go through and how fantastically they are at coping can be quite invigorating, even if your husband doesn't feel up to posting himself, being involved in discussions like this one helps. Loneliness can be a bad thing with brain injury.

    Finally, I don't know if it could help, but I started to feel so much better from when my psychiatrist prescribed pregablin. Low dose to start and then raise it accordingly. Might be worth asking the doctors, it also has anti anxiety properties.

    Anyway, best of luck and try and have a good new year.

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